G'day My name is Cassie and I have an 18 month old son, Gus. He was diagnosed with AHC 4 months ago. Previous to that he had been misdiagnosed with epilepsy....
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MandM421@...
Oct 12, 2000 6:57 pm
Cassie my name is Mindy and my daughter Hailey has AHC she is 3 1/2 ......I know how you feel...well I'm sure we all do.........ask away I'll be happy to ...
153
richard.p.george@...
Oct 12, 2000 8:45 pm
Hi Cassie my name is Rich George I am the president of the alternating hemiplegia foundation, and I am in Michigan.This foundation is the only organization...
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Marcia Perkins
marcia.perkins@...
Oct 13, 2000 12:57 pm
Cassie, Hi, my name is Marcia and my daughter Jenny, age 13, has AHC. It took us 6 years to get her diagnosed. After that when we were able to get...
155
MandM421@...
Oct 13, 2000 1:11 pm
richard it's mindy and i want to e mail you something and can't find where i put your new address not like i have a million things going on here ha ha ..... ...
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KathHurl@...
Oct 16, 2000 2:53 pm
Hi, Cassie -- my name is Kathy and I have an 11yr old daughter, Abbie, who was diagnosed with AHC when she was about 2. She is quite simply the most wonderful...
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Lynda Burnham
lynda.burnham@...
Oct 17, 2000 9:20 pm
Hello: I am the mother of probably the oldest living person afflicted with ahc. Leslie, my daughter is 36 years old. We have come a long way since the early...
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richard.p.george@...
Oct 18, 2000 3:38 am
Hi Lynda: Welcome to the group. My name is Richard George and I am the father of Nicholas George, age 9, and like most everyone else, he was mis- diagnosed...
159
Cassie Dawes
cassandradawes@...
Oct 19, 2000 6:31 am
Thank you to everyone for your replies, they have been great. It may take me a while to respond with more specific questions. I had a baby girl 2 weeks ago and...
160
dehn_1
dehn_1@...
Oct 19, 2000 9:31 pm
HI THIS IS CARRIE DEHN..MOTHER OF HALEY AGE 8 WITH AHC...I AGREE WITH RICHIE..WRITE IT DOWN FOR US..EVEN IF IT IS IN AN INFORMAL LETTER..I AM SURE THAT ALL OF...
161
Lynda Burnham
lynda.burnham@...
Oct 20, 2000 4:22 am
Hello: Well I have been very surprised by the response that I have had since coming on board. We have had a few seizures here and as I know that you all...
162
yvonne3
yvonne3@...
Oct 20, 2000 1:56 pm
Just wanted to drop in and let everyone know how Kristen is doing with the nerve stimulator. It's been almost a month since we turned the device on. She is...
163
ggarnet102@...
Oct 27, 2000 8:40 pm
Hi again, My name is Hannah and my son, Ryan is nineteen and has A.H.S. It was good to hear from Lynda, since I thought I would never hear of an older person...
164
Lynda Burnham
lynda.burnham@...
Oct 29, 2000 4:01 pm
Hi Richard: Sorry for the delay. You have asked a few questions about Leslie, I will offer what I can but do not take this as a quideline for all. When Leslie...
165
yvonne3
yvonne3@...
Oct 30, 2000 3:44 am
Lynda, Hi my name is Yvonne and I have a daughter that is almost 7 and has AHC. I was reading your e mail and was wondering what you mean by super seizures?...
166
Bob or Donna Busby
rbusby@...
Oct 30, 2000 4:19 am
Hi Lynda, My name is Donna, I have a 14 year old son Jayme with AHC. I am very interested in what you wrote about a group home for Leslie. I was wondering at...
167
Lynda Burnham
lynda.burnham@...
Oct 30, 2000 5:02 pm
Hi Yvonne: Leslie's seizures are status. Therefore they do not stop. She can have one, may last for l0-20 mins, many times much longer. Then she will go into...
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Lynda Burnham
lynda.burnham@...
Oct 30, 2000 5:21 pm
Hi Hanna: I am finally getting back to all of the email I have received. Leslie has only been in sheltered workshops and unfortunately has not had the ability...
169
Lynda Burnham
lynda.burnham@...
Oct 30, 2000 5:51 pm
Hi Bob & Donna: Leslie went into the group home when she was l5 years old. Partially her choice and ours. She at the time was in a school programme that had...
170
MANEEXP@...
Oct 30, 2000 6:52 pm
Dear cassie,I just got your e mail and can tell you this, that medication like Flanarizine is the drug of choice but hard to get unless its easy to get in your...
171
MANEEXP@...
Oct 30, 2000 6:56 pm
Hi,Im David Father OF ashley she is 11 yrs,I have many questions,what is life like at this point of your daughters life,medications and life style,please ...
172
yvonne3
yvonne3@...
Oct 31, 2000 3:08 am
Lynda, Thanks for your e mail. You sound like you have been through all aspects of AHC. Kristen has status seizures also. The difference being that hers are ...
173
Lynda Burnham
lynda.burnham@...
Oct 31, 2000 1:01 pm
Hi Yvonne: Leslie did have some seizures in her early years but they did not seem to pose too much problem. When I look back, I guess that to me it was all...
174
Lynda Burnham
lynda.burnham@...
Oct 31, 2000 2:59 pm
Hi David: In response to your inquiry re our life at this time. Well things have pretty much continued along. Leslie developed at a slower pace than other...
175
ggarnet102@...
Nov 1, 2000 12:44 am
176
MandM421@...
Nov 1, 2000 7:33 pm
Hello This is Mindy mother of Hailey 3 years 9 months just have a question for anyone who can answer.we started potty traing Hailey a few days ago........what...
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Carol Presunka
calliving@...
Nov 1, 2000 9:18 pm
Hi Mindy, We too are toilet training Alex, 3 1/2 years old. I'll be interested in hearing the responses. Can you tell me how it has been going with you? Alex...
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Marcia Perkins
marcia.perkins@...
Nov 2, 2000 12:18 am
lynda has leslie ever taken the drug flunarizine? marcia...
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Lynda Burnham
lynda.burnham@...
Nov 2, 2000 12:39 am
Hi Marcia: Yes, we tried flunarazine a few times. It was not good for her. She became very very aggressive and I did not personally see any improvement in...
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ggarnet102@...
Nov 2, 2000 1:47 am
Hi Mindy, About potty training, I can tell you what I did and continue to do. Although Ryan was trained later, at five years of age because that is when he...
